When Did I Lose My Rights?

My friend asked me a question the other day. On Loose Women there was a debate over a man on benefits who had spent £250 on a spot the ball competition and won, both the cash prize and an expensive car. Apparently the debate was whether he should give back the money or not? I’m so out of touch with popular opinion that I couldn't even understand the question I was being asked. I was confused and then angry when my friend told me that the entire panel and most of the audience felt that this man should not have been able to have this prize.

I understand that by winning a large cash prize the man was no longer eligible for benefits and that is only fair, but I couldn't understand why he shouldn't be able to enter a competition or win. Apparently, it was felt that he shouldn't have been able to enter, because he was on benefits. Since the panel and all those virtuous audience members were working to fund his benefits they felt they could tell him how he could spend his benefits money.

I would like to come out here as a benefit claimant. I claim a certain amount of benefits because of my disability – some ESA and some DLA – but I also have a small pension. My pension comes from my late husband’s job at the Open University and is just enough to mean I pay income tax. I pay income tax at about the same rate that I get ESA. They offset each other. So, I guess I’m in a very unique position. I claim benefits and I pay tax. I just wondered when it was that benefit claimants lost all their rights? We seem to have come to a place where admitting to claiming money from the state, even if you are entitled to claim and legitimately disabled, is a dangerous thing.  On Saturday my friend and I were in a local department store, indulging in some retail therapy after some nasty spine injections. We were asked at the counter if we wanted a premier card for the store; a new credit and loyalty card they’d brought in. We politely declined and explained we were just indulging after clearing out the wardrobe on Ebay. They still pushed the point until we explained we didn't think we had enough income to qualify. She asked if we were on benefits and my friend actually hesitated before replying, because she didn't want to be judged. This is where the recent government and media rhetoric about benefits has gone too far.

If I get benefits does that mean someone else can judge me or tell me how to spend them? Yes, there are a certain amount of fraudsters out there, but the way the recession has been blamed on people like me is disgusting. The proportion of the welfare budget spent on disability benefits is small compared to pensions and the proportion of benefit fraud is also smaller than you would think. Last year I saw a headline in the Express that almost made my foam at the mouth: ‘Disability claimants given brand new BMWs’. Anyone who understands the Motability scheme knows that nobody is given anything; the DLA claimant pays a deposit and then surrenders their monthly benefit in order to hire a car along with insurance and maintenance. Sometimes the deposit is as much as £2000 for certain cars and I’m sure the BMW would have required this sort of deposit.  What people don’t know is that in order to have a lot of modifications such as hand controls, or wheelchair positions for driving, the claimant has to come up with even more money or wait for an application to go through the Motability charity.

Nothing comes for free where disability is concerned. My husband was given wheelchair vouchers totalling £600, when every wheelchair ever needed cost over £1000. He tried to work as long as possible so despite having a long list of drug requirements he was ineligible for free prescriptions as he didn’t claim a means tested benefit and had MS which isn't an exempt condition where prescriptions are concerned. When he gave up work because he was too sick to carry on, and got a pension worth half his monthly salary he was suddenly slammed with a care bill for over £700 per month; earned wages were exempt from care calculations, but pensions were fair game. When people talk to me about equipment, cars and money being given it is open season as far as I’m concerned – out comes the soap box and off I go!

In my opinion, people on benefits do not have to answer to anybody when spending their money. I don’t expect anyone to answer to me on how they spend their money. Yes of course there is the debate over people spending money on cigarettes, or drink when their children are being neglected but surely the issue there is child abuse or neglect not how they spend their money? Are we coming to the point where instead of benefits people will be given tokens so they have to spend them in certain stores? They would be banned from using them on things other ‘work hard and get on’ people find objectionable. This, for me, would be leaving the way open to those who object to disabled people living independently (how would we control their spending or the way they live?), driving cars that look like everyone else’s (surely they should all have invacars because they’re cheap and identifiable), and even having children (how will they look after them and what if they pass on their disability cooties?). I might object to the fact that the Queen hurried back from her duties to put some money on the Derby – what if she did win and should she give back her winnings considering she is funded by the state?

I do not defend people being on benefits for a lifestyle choice, but I’m not sure that there are many of those people out there, certainly not as many as the newspapers would have us believe. Even as I write this there has been another advert for a series on Channel 5 with the voice over - ‘welcome to the full-time job of living off the state’. We need to see this for what it is. Propaganda and TV producers wanting to create controversy and ratings; if they can get their program debated on The Wright Stuff tomorrow morning so much the better. Not all of us have the chances or the talent of some of the presenters on such shows as this and Loose Women mentioned earlier. I want people to think beyond the headlines and learn what it really is like to live on benefits. The man in the original story may well have been a gambling addict in which case he got lucky, this time. He might have decided to spend a week’s money on the competition because he was so sure he had the correct place and felt he could live on beans for a week. In the end, for me, it was his choice and his win. When we start taking away people’s choices we have become a society I don’t want to live in.

Feeling Normal

Feeling Normal

A few months ago I chatted with an MS friend and we talked about how we’d forgotten what it was like to wake up and feel well. That feeling when you wake up, rested, throw back the covers and leap out of bed. I know I used to do it. I remember working a shift in my local pub till around 11.30pm and then get back out of bed at 5.30am to go to work at the nursing home that was my second job. I partied hard, worked hard and sometimes I wonder if I didn't do too much! That was the last time I remember getting out of bed in the morning and feeling well; I didn't even think about it. I never appreciated it, until now.

A fortnight ago I went to hospital and had some injections in my spine. I was not looking forward to them and as soon as the doctor mentioned them my face must have been a picture because he immediately offered a general anesthetic. It was the only way it was ever going to happen! I blogged about the experience, which wasn't a picnic, but now two weeks on I can look back on it with some perspective. For a week the pain was much worse. I took oramorph for three days to get out of bed and had a few pajama days. I was grumpy, and bad tempered and cursed the day I’d ever let a needle near my spine. I kept wondering if it was really worth it and had a discussion with a friend about whether any of the interventions worked enough. We’d been talking side effects and I was still in pain. I imagined this holy grail, Shangri-La style place where I could be looked after while I stopped taking all my tablets and then started again with a clean slate.

In this ridiculous fantasy (which I now spend more time day-dreaming about then I do about George Clooney) I stay in this place that looks like the Himalaya. Lovely Buddhist monks bring me special tea that stops the withdrawal and makes me feel peaceful. Obviously, this being a fantasy, I come out of the experience healthy, but also glowing and 3 stone later with a body like Scarlett Johansson. I don’t want much do I?

Instead of Buddhist monks I have my pain consultant Dr EL. He is short, funny and perceptive man who gets pain. He walks with a pronounced swing in his gait – his left leg is either a prosthetic or he has an artificial hip that doesn't quite roll properly in the joint. He never talks about his own disability, he never uses it to motivate me with comparisons to my own condition, and he treats me with respect. When we have a consultation I feel like we’re working together, not that he is doing treatments to me. On the day of my injections I went down to xray and he was waiting there ready to do my injections. We talked about where they would be and he joked that he wished I’d had a tattoo over the pressure points so he could see where to put them – this is an idea I might adopt actually and put stars everywhere he needs one! I noticed he struggled to put on his gown because of the rigidity in his own spine and just like me he couldn't reach round and tie his gown properly. Thankfully for him he was wearing his trousers and shirt underneath, whereas I’d had my arse hanging out most of the day!

Somehow, putting myself in the hands of someone who understands me feels so much better. There is no judgement, no questioning and he never looks skeptical. He just believes me. Whereas I have to fight my corner with the benefits system, with my neurologist, with people I meet and for five years with my ex-husband, I never have to fight with him. I explain it and he accepts it. He just believes my lived experience.

So, now, two weeks on I am cannot believe the difference in me. For the last three nights I have slept through the night, I have not needed to sleep in the day and I can move. My knees, which were so painful I couldn't stand up without making noises or uttering swear words, are smooth and support me. I don’t have the nagging pain in the bottom of my heel that was making me want to chop off my right foot. There is no electrical charge down the back of my leg and no cramp in my lower spine and down into my bottom. This morning I woke and sat up without thinking about how I was going to do it. I surprised myself by sitting up with no problems. I had a clear head and could bend my neck. I swept back the covers and while I wouldn't call it leaping out of bed, there was certainly a smoother and easier movement. I ache a little. Imagine the pain after taking a long bike ride or going back to the gym after a break. It’s useful pain that tells me my muscles are working, instead of a nagging toothache in every joint which is so debilitating I can’t even walk to the gate. Since the injections have kicked in I have started to feel stronger. It’s not a cure, but it is close to making life tolerable. I can manage life like this. I can cope. Now I need to write a lovely note to my doctor  to thank him, because instead of using his own pain to intimidate or outdo his patients, he uses it to understand and soothe us. He is the best kind of doctor.

Simply Wasting Away!

‘Everyone thinks cancer makes you thin. In fact I’m getting fatter and fatter’.

Ruth Picardie. Observer Life 27^th July 1997

In her own witty and inimitable way, Observer columnist Ruth Picardie, already addressed this subject in the above quoted column, but nearly 14 years later I think it needs another airing. I recently blogged about the word ‘fat’ being the ultimate swear word, and how by admitting to it and being honest about who we are we can stop skirting round the issue of weight. I am, by NHS standards, obese and seriously in need of losing weight. I’m also seriously in need of a new nervous system and I think the wait for both of those things will be equally long. The myth that Ruth Picardie stuck a pin into all those years ago was the myth of illness and emaciation; the Victorian romantic fascination of consumptives simply wasting away to a hollow cheeked, but beautiful end. As Susan Sontag brilliantly addressed many years ago illness has its metaphors, and this metaphor is still alive and well in 2014.

One of the frequently asked questions when I say I have MS (not to mention all my other nagging problems) is ‘isn’t that one of those wasting diseases?’ After 15 years of living alongside this illness I have become a little bored of describing myelin sheaths as the cord covering electrical wires, keeping them safe, helping them transmit messages, so sometimes I do just nod and say ‘something like that yes’. Then I leave myself open to the inevitable come back as they take in my size 16-18 curves and say ‘well at least you look well’. This is the polite way of telling me that I’m not wasting anywhere as yet.

‘You look well’. It is so simple, and seems like a compliment, but of course women, and particularly women with MS, are ever so touchy.  Yet, in a world where people are now too scared to look well is looking fat going to be the next issue? Where I practice counselling I heard a woman with MS say to another ‘I would love to do the Race for Life, because of my mum. I’d go round on my crutches but I’m scared to do it in case someone reports me’. This is so sad it makes my heart break. The only perk of having such a variable disease is that sometimes there are up days, but if you can’t take advantage of those up days and do something fabulous for fun or something that will create meaning in your life, then you take away that person’s reason for living.

I was once confronted by a friend’s brother, who I’d never met before when I collected him from work. His first words were:

‘So you’re the one with MS?’

‘Yes’.

There was then a discernible taking in of my appearance as he slowly looked me up and down and said ‘well you look okay to me’. I was newly diagnosed then and although I felt disconcerted and somehow fraudulent because of what he said I didn't know why. This was before I’d had my eyes opened and realised I was firmly placed in the ranks of the abnormal; they don’t keep fit, don’t breed, don’t stay married, and don’t work brigade. I like it here. There are fewer rules.

Now I've become disability radicalised (this doesn’t just make me disabled and fat it makes me a spoilsport without a sense of humour) I jump on every phrase like this. I am ready with a handy quip or the straight forwardly challenging ‘oh I’m sorry, but I don’t understand what you mean by that?’ that makes them look at their shoes and question why they ever talked to me in the first place. The obvious and sarcastic answer to ‘you look well to me’  was ‘oh, sorry my mistake, I must run to the neurologists and inform him the MRI was wrong because you can clearly see there’s nothing wrong with me. Please share with me your long list of experience and qualifications’. In the moment though, these things are never said; I am often too disarmed to think quickly enough – a cognitive problem due to my invisible and therefore, non-existent disability.

People with disabilities should not have to defend themselves in this way, but they often do. I think the average person would be surprised by the myths and metaphors that still surround disability. It seems that these days the Mail and the Express are unhappy unless a disabled or sick person is visibly hobbled in some way – carrying a visual aid such as a stick or crutches helps with this and ironically if you are using a wheelchair you are often pushed right to the front of queues despite the fact that other ‘walking wounded’ individuals are still standing right in front of people’s eyes. The idea of the ‘worthy’ sick person is alive and well so after the obvious sign of being a cripple (maybe we should have a symbol stitched onto our clothing?) the sick person must be pale, wasted, badly dressed and probably very poor. They must look as if they are worse off than the hard-working, and getting on people. They must look as if they haven’t been able to struggle out the door at all times and the biggest rule of all is that they must always, always be wasting away.

There are millions of reasons people with disabilities put on weight, because we’re individuals and our reasons are as legion as yours. I was once asked ‘what do disabled people want?’ to which I replied ‘I don’t know I haven’t asked them all yet’. I can only tell you my reasons and common reasons such as the ones Ruth Picardie puts forward in her writing. Illness makes me sedentary because if every step feels like walking on knives or makes you feel as if someone is trying to prize your skull from your spine then walking is not a priority. There is the standard DLA/PIP question about walking twenty yards, but no nuance about whether that twenty yards feels like a marathon. I gradually became more and more sedentary because I simply was not comfortable enough and now that I can walk a little further thanks to controlled release morphine, I am scared someone will report me for walking that bit further. Weight bearing exercise is a no-no because that causes my muscles to spasm and joints to swell; it defeats the object when one session can leave me crippled for a week. Then add on the drugs – the steroids which pile on weight, the pre-gablin which has the side effect of piling on weight and the amitriptyline which has the side effect of piling on weight. Ruth Picardie also mentions the gifts brought to you when you are unwell; although you are grateful for the thought an everlasting supply of chocolate or cake seems to come through the door because people want to treat you and considering the limitations of the disease it’s hard to find treats in other ways so you succumb to chocolate.

 Comfort eating has been my friend for many years because it’s the best quick fix for feeling grotty, alongside a good book or a great film. I don’t smoke, and I can’t drink much due to the medication so I don’t have many vices left, instead I have cultured a dependence on Green and Blacks and carrot cake, or my worst downfall – chocolate Philadelphia on digestive biscuits. I love the comfort of great big milky chai tea lattes and red velvet cupcakes are a particular indulgence. Many of the activities I do involve eating such as meeting friends for meals or a coffee, cakes at book club or cherry bake wells at the cinema. I love cooking for friends when I can, but I need a complete re-education or an over-eater’s anonymous subscription to manage the way I enjoy food. So, these are the reasons I am fat. Every person is different, but I think a lot of people with disabilities will recognise this pattern and next time you see a fat person on a mobility scooter and immediately think he is a lazy bastard who looks perfectly well to you, have another look. Is he struggling to walk because he is fat or because he has rheumatoid arthritis; does he have the tell-tale moon face of someone on steroids, or is he simply so lonely and dehumanised by his disability that chocolate is his comfort. Think beyond the stereotype of the wasting, battling, terminally ill patient and see human beings.